What some carers do

Every caring situation is different. There are no specific responsibilities for a carer; your role will depend on the needs of the person you are caring for and what you are able to do. Your role and the level of care you provide may change over time.

Caring is often more than a one-person job. Consider sharing the responsibilities with family, friends, or various support services.

Work with the health care team

As a carer you’re part of a health care team made up of doctors, nurses and other health professionals who specialise in treating cancer. In some treatment centres these specialists work together closely – this is often referred to as a multidisciplinary team.

The team will discuss the needs of the person with cancer and recommend the best treatment. They may also refer the person to other specialists to ensure all aspects of their care are covered.

Dealing with health professionals can be intimidating, especially if you haven’t done it much before. You may feel overwhelmed with all the new and complex information. It can be frightening to go to a new clinic or treatment centre. Having one contact person in the multidisciplinary team may make you feel more comfortable.

If you feel you aren’t being recognised as a carer, talk to the health care team about your role. For example, some young carers are not included in important conversations because the health professionals believe that the person is too young to be in the carer role.

Preparing for the doctor’s appointment

Before the visit

  • Talk to the person you care for, discuss any questions you both have and write them down beforehand so you don’t forget anything. It may help to do some research at the library or on the internet, so you can ask informed questions.
  • List all the drugs being taken and their doses, and note any side effects experienced.
  • Check with the medical centre about what you need to bring, e.g. test results, scans, blood tests.
  • Write down any change in the patient’s condition.
  • Ask for a longer appointment if you have a lot of questions.

During the visit

  • Take notes or record the discussion with the doctor.
  • Write down any specific instructions.
  • Check that your notes and understanding are correct.
  • Ask the doctor if they can give you printed material or tell you where to find further information.

After the visit

  • Review your notes.
  • Record the next appointment.
  • Call the doctor for any test results.
  • Contact the doctor about changes in the patient’s condition.

Stay safe at home

Depending on the needs of the person you are caring for, you may have to make some changes to their home.

Tips
  • Rearrange furniture to make access easier, and remove loose rugs and other tripping hazards.
  • Talk to an occupational therapist about changes you can make or equipment you can hire or purchase. This may include putting handrails on the stairs or in the bathroom, or moving the main living area to an easily accessible part of the house.
  • Look after your back if you have to lift the person you’re caring for. Ask someone, such as a physiotherapist,   to show you how to lift safely. You may be able to hire or purchase equipment to help you.

Communicate with family and friends

Many carers say they find keeping family and friends up to date on the condition of the person with cancer time-consuming and tiring. Some carers also find it stressful dealing with other people’s reactions to the updates.

Tips
  • Use technology such as group text messages or emails to keep others up to date. You may want to start an online diary or blog.
  • Ask a family member or friend to keep others up to date.
  • Leave a message on the answering machine to reduce some of the time needed to answer calls. You could say something like, “Bill is doing okay with the chemo. He’s mainly feeling tired. Thanks for your concern.”

Manage medications

The person with cancer may be taking prescription and non-prescription medications. Keeping a list of the names of these drugs, their purpose, dosage, when to take them and any side effects, will help you administer them safely. It can also save time and confusion when seeing health professionals.

You may want to use a Medi-List form available from your pharmacist or create your own log or spreadsheet.

Contact Medicare to learn more about the Safety Net concession card, to reduce the amount of money you spend on medication per year.

Questions for administering drugs

You should know the following information about the medication you are administering, or ask the doctor or chemist:

  • How should it be given (with food, without food, orally, etc)?
  • Is there anything, such as alcohol, that should be avoided while taking the medication?
  • Does the drug interact with other drugs or vitamin supplements?
  • Are there any possible side effects? What should I do if the person experiences side effects?
  • How long will the medicine be needed?
  • What should I do if a dose is missed?
  • When is the use-by date?

Manage finances

Caring for someone with cancer can be a difficult time financially. There may be a drop in your household income if you or your partner have reduced work hours or stop working. There may also be new expenses such as childcare, transport, medication and equipment.

Various organisations can help you with financial issues, such as budgeting, refinancing or counselling. In addition, you can talk to the hospital social worker about financial or practical assistance available, and apply for it as soon as possible. You may be eligible for financial assistance from volunteer bodies, church groups or your local council.

Centrelink is a government organisation that supports primary carers financially through various schemes

  • Carer Payment (adult) – allocated to carers who provide full-time assistance in the home of the ill person. This payment is income- and asset-tested.
  • Carer Allowance (adult) – for carers who provide a significant amount of assistance, either in their own home or in the home of the sick person. The allowance is not means tested so you may be eligible for it if you are working or receiving another pension.
  • Carer Payment (child) – for people who are not able to participate in the work force because they are caring full-time for an ill child. It is income- and asset-tested.
  • Carer Allowance (child) – for people who provide a significant amount of care to a child under age 16 while living in the same home. A number of factors influence the rate of the allowance.

If the person with cancer travels for treatment, they may be entitled to financial assistance from their state or territory government.

Enduring Power of Attorney

The person with cancer may appoint you as their Enduring Power of Attorney while they are undergoing treatment. This gives you power to act on their behalf on all financial matters, and it will also enable you to do things such as pay bills and manage bank accounts.

An Enduring Power of Attorney differs from a Power of Attorney because it means you can act on behalf of the person you care for even if they lose the capacity to make their own decisions.

Consult a solicitor for more detail about this and advice about how to make legal arrangements.

Manage pain

If the person is in pain, they may become irritable or even aggressive. In most cases, pain can be controlled throughout treatment with medications or other techniques. Talk to the health care team if the person is experiencing discomfort.

Tips
  • Use a pain scale to help you understand the intensity of the person’s pain. This may help them communicate   the need for extra doses of pain medication.
  • Keep a diary of the patient’s pain levels and symptoms.
  • Let the health care team know how the medication has been working and notify them of any changes.
  • You may be concerned if the person needs stronger pain relievers, but addiction is not an issue for people with cancer. Pain relief medication helps them stay as comfortable as possible.
  • Try relieving pain and discomfort with hot-water bottles, ice packs or gentle massage.

Prepare food and drinks

When the person you care for is having treatment you may notice their appetite changes or they have problems eating. They may not even be able to tolerate their favourite foods.

Treatments such as chemotherapy and radiotherapy damage and kill cancer cells but also affect healthy cells. This may cause side effects such as:

  • loss of appetite
  • nausea
  • fatigue and tiredness
  • mouth or throat sores
  • taste changes
  • constipation or diarrhoea.

If the person with cancer refuses food you have prepared, try not to take it personally; they are unwell and the treatment has changed their taste and appetite. Nausea and poor appetite can last for several months after treatment has finished.

You may feel anxious because you want the person to eat well so they can cope with the side effects from the treatment and recover quickly. However, it’s not necessary to follow a strict eating plan.

Tips
  • Cook extra food and freeze it for another day.
  • If the person you’re caring for was the main cook, ask them for recipes.
  • Make meals a time when you can sit together and talk.
  • If the person you care for is losing weight, talk to your doctor, dietitian or pharmacist about digestive aids or dietary supplements.
  • Take extra care when preparing food because cancer and its treatment weaken the body’s immune system. Always wash your hands before preparing food and take special care when handling raw meat, fish and chicken.
  • Store ready-made supermarket meals in the freezer.
  • If the person is nauseous due to radiotherapy or chemotherapy, ask the health care team if they can prescribe medication.
  • Ask to try different nausea medication until you find one that works well for you. Nausea and poor appetite can last for several months after treatment has finished.
  • Offer the person’s favourite or well-tolerated   foods often

Manage paperwork

Paperwork can pile up. You may have to keep track of bills, receipts and letters from health professionals. It’s easier if you have them all in one place such as a folder, expanding file or filing cabinet. Although it might take a bit of effort and time to set up initially, carers who have an organised system say it is worth the effort.

Long-distance caring

Living away from the person with cancer can be difficult. You may feel guilty for not being closer, and you may feel you are the last one to know about treatment and care. This can be frustrating when you want to stay involved.

However, there are many things you can do. Living away from the everyday care may mean you have a different perspective on the situation. This may help you solve problems or coordinate care.

Tips
  • Try to create a support network of volunteer and paid carers, service providers, relatives and friends to regularly visit the patient. These people should be reliable in case of an accident or emergency.
  • Create a contact list of the health professionals who are looking after the person with cancer, and keep this list handy in case you need to contact them.
  • Use technology (such as email, blogging, text messaging and video conferencing) to stay in touch.
  • Ask the person if their doctor will allow them to record consultations, so you can hear what was discussed.
  • Look at the best possible telephone (landline and/or mobile) plan to reduce your costs.
  • If you visit the person with cancer to take care of them, try to have a rest when you return home.
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